NHS incompetence will possibly cost my life?

Are you sitting down? Get ready. 

Back in Sep 16 I was hospitalized at a hospital in London with fever/inflammation and the discharge paper showed possible acute colitis. I was sent home once i felt better. As far as the hospital was concerned I had nothing serious. The very next month after failing to open my bowels for 10 days i was hospitalized again. I had bowel blockage and had emergency surgery which resulted in resection and a biopsy was done.

Few days later while I was in bed my consultant with a MacMillan nurse came to break the news to me. My consultant though showing great apathy told me in sort of diplomatic terms that the biopsy showed that I have cancer. I asked what stage and the Macmillan nurse jumped in, approached me,sat by me and told me " it's at least stage III ". To say I was angry inside me it would be an understament. What kind of presentation of a diagnosis was that? Considering stage IV can be a death sentence how the hell can you say to someone "at least stage III" ? They sort of justified this by saying "we knew you wanted to know everything so we came to tell you."  My consultant made everything worse by saying (it was Thursday) "you will have a CT scan around Monday to ensure the staging". Eh??? They would let a fragile person wait 4 days not knowing if he's going to survive this? He should have been in my position!. To his defence while his vibe wasn't really what it should be when presenting cancer diagnosis, the vibe of the Macmilland nurse was absolutely TERRIBLE. How the hell they have these people doing this part of the job that requires sensitivity, empathy and a certain level of smoothness.

Ayyway, biopsy showed a moderately differentiated adenocarcinoma of the Sigmoid. Stage III (2/19 lymphs). I had a resection with a temporary colostomy. Two days after surgery my surgeon (he seemed like a great guy) told me that during the open surgery he could see 2 lesions on my liver but he didn't feel this is metastasis. I did an MRI with contrast of the liver which was incloclusive. We kept a close eye on those lesions. I begun chemotherapy and 3 months in I had another MRI. Those 2 lesions still there unchanged. After 6 months and once my chemo was finished i had a third MRI, lesions were still the same. My oncologist told me that these are unlikely to be malignant, if they were they would have changed by now after all this chemo. To ensure these are really bening my case was discussed at the Imperial liver MDT. They came back and said that these lesions are non suspicious and non malignant. Radiologist said i should do  Primovist scan to chracterize further but my oncologist told me that in view of Imperial liver MDT assessment no further imagine is needed and 99.9% these lesions are bening. So I felt that settled it.

Around that time my 6 months in since resection routine CT scan was done and had me in remission so all was ok and I felt rather content and confident. All I had to do now is slowly recover after all this chemo, do a colonoscopy and for last stage have my colostomy reversed. 
Another 6 months down the line (last month) I had my colonoscopy which showed no signs of recurrence. I was really happy now as Hartmaans reversal was finally close. This is from where things begun going downhill (from a psychologist point of view at least).
I began feeling a great pain in my right kidney and I attributed it to passing a kidney stone. This pain passed in a few hours but then a few days later I had a pinching pain in the lower end of my ureter. I thought this must be because the stone must have scarred it. I began taking some pain killers and after about 3 weeks the pain ceased completely. I decided to investigate this further and went to the hospital to have a CT urinary scan which showed no stone and that was all they told me. With that said my creatinine was relatively high (151) which meant something is wrong. The time came to have my second surveillance routing CT scan. Did the scan went home and very quickly I got a letter to see my consultant.
During the appointment he told me that I have a recurrence in the upper urinary tract, right side, and that is partially blocking my ureter and thus putting pressure on my kidney. Also one of the two liver lesions that I had, has increased in size. He didn't tell me that I have liver mestastasis but he seemed confident in calling the obstruction of my ureter as something that comes from a malignant mass. He called it a recurrence after all.

The CT scan came with the following results and I quote exactly: Comparison is made with the previous CT scans back to Sep 16 and MRI of the liver May 17. There are no enlarged mediastinal lymph nodes. There are no focal pulmonary lesion seen. There is an increase in the size of the right pelvic sidewall mass previously measuring 2.4 x 1.7 x 1.9m and is now measuring 3.1 x 3 x 3.5cm. This lesion is causing obstruction of the right ureter with dilatation of the right pelvicalyceal system. The right kidney does not show the same level of contrast enchancement as the left denoting impaired function. (I jump a few lines here)
and the report goes on: There is a large 3.7cm hypodence lesion within segment 8 of the liver most likely represents a metastatic deposit. There is a suspicion of a smaller hypodense lesion within segment 5. The are no enlarged retroperitoneal lymph nodes.

Continues in next post

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  • Impression

    Right pelvic sidewall mass that has increased in size and is causing obstruction of the right ureter. Urgent urological referral is needed. MRI of the pelvis for assessment of local extension is needed.
    New large right liver lobe lesion that is suspicious for metastasis, further evaluation by MRI to rule out other lesion is recommended.
    End of report

    Do note here that the person writing this compared a CT scan with an MRI scan as since since May i have done no more MRI's. My consultant said that one of my lesions has increased in size yet not mention of it in these results. Hm?

    I was so angry after reading this report, i'll explain more in a bit. I also got a letter in the post which shows that my NEW oncologist who has just taken over from the previous oncologist (who was fully aware of my histology) is requesting MRI's of the pelvis,liver, blood tests etc. Further down the letter I see the following: Clinical details: pre urology stent consideration, relapsing colon cancer with R obstructed kidney, R PSW mass, ? New liver mestases.

    I had a cystoscopy and a stent put in my ureter to safeguard my kidney and relieve the blockage.


    Getting back to my CT scan results now. You will notice a mention of a tumour which has increased in size. This petrified me. I begun going through all my paper from the hospital and I found in a discharge letter back in Sep 16 that I possibly have acute colitis and in the 2nd paragraph this:  Of concern is a solid enchancing nodular lesion in the right lesser pelvis measuring 22.3mm x 10.9mm which appears to be a lymph node enlargement. No perforation.

    WHAT IS THIS? Nobody told me anything about this and I had to find out alone by investigative work going back to the day before my cancer diagnosis. From October 16 (after cancer diagnosis) and onwards I can recall 2-3 CT scans and all showed me clear of tumors. No one ever mentioned to me this tumor before. How come nobody saw a suspicious mass there and this was only seen in Sep 16, it then dissapeared for a year, and now my consultant based on my last scan (this mont) called it a recurrence??. My consultant obviously read what my oncologist wrote to him as he himself as we can see is calling it "relapsing colon cancer".

    Well. clearly it is not a recurrence as this has been there a month before my colon cancer diagnosis going back 1 year and 1 month.

    I have done extensive research and for a colon cancer to metastasize to the ureter is SO UNCOMMON (unless by direct extention meaning from the urethra/kidney etc. and then this is still rare)  that is unheard of. It is so extremely rare that it almost cannot happen. I doubt any of the doctors at the hospital have ever come accross this as there are very few reported cases worldwide.

    As you can understand this mass has been over there for a year now, my consultant obviously doesn't know what he's talking about nor my oncologist and am here scared now that IF this is cancerous it won't be at an early stage. Further on my liver lesions had been ruled out and now the latest scan shows mestastasis????? What in the hell is going on?

    My guess is that my new oncologist or radiologist isn't aware of my histology, saw the latest CT scan and called the liver lesions as metastastic without knowing these lesions have been ruled out in the past. I HOPE this is the case. Also what about this tumor pressing my ureter???
    Having done further research I found that my blood levels: CEA (3), CRP(3.6) and white cells t is perfectly normal unlike the days before my cancer resection. For me to have a systemic disease at this point, meaning 2 malignant tumors inside me (liver and ureter) and for this to not be reflected in my blood seems sort of unlikely. I also have no symptoms and feel perfectly fine. This gives me some hope.I worry a lot that NHS has screwed me over.

    If I happen to have cancer inside me (no official diagnosis yet) as a result of negligence I will sue the NHS and take down with me all the culprits. Tomorrow am going to the hospital to demand to speak to an oncologist/radiologist/chief executive of the hospital in order to clear things up.

    I haven't been receiving proper care. There is a chance NHS has ruined my life due to incompetence.

    I am only 32, without a job, no partner, money problems and various health problems in the family and now I have to face this incompetence.

    At this point I will not name individuals.

  • Hello 

    we went hospital exactly this time last year. Husband struggling to swallow and eat and loosing weight rapidly. Every time camera went down it struggled to go throu. Numerous biopsy’s and even CT scans and a PET scan failed to show a stage 4 inoperable stomach tumour. So they say it wasn’t there in January but now “it’s possible it’s been there over a year”??? 

    Weve taken it the hospital complaints procedure that states a misdiagnosis was made and this cancer has been there all along. 

    Proving them to be both negligent AND on causation is gonna be a battle I think. But a battle I’m willing to take 

    one solicitor says they were negligent and should of done something with his atypical cells on biopsy’s but the outcome they’re saying would be the same...although I beg to differ as if seen 6 months ago when presented then he may have had the option of surgery and now it’s only palliative chemo. 43 years old and two young boys 

  • Hi Gemini,

    I'm not a doctor or anything but I can repeat back some of the possible reasons I've been given for cancers which with hindsight must have been there for over a year not being detected until stage 4. Some of these can't be helped, but others are grounds for accusations of incompetence. I'm sure there are others, but these were the ones I was given. 

    Ultrasound isn't always effective in detecting cancer (after my ultrasound I was told there is nothing unusual there, but I insisted on further tests because I knew how ineffective ultrasounds can be).

    When the first scan was done the primary was too small to be detected by ultrasound or CT scan (when chemo shrunk my secondaries my oncologist said that they were probably still there but that CT isn't good for detecting anything smaller than about 3mm across). 

    They did an ordinary CT scan, rather than CT with contrast (the contrast helps make the cancer more obvious to whoever is interpreting the scan and producing the report for the Oncology team. I had one CT scan without contrast as they couldn't access a vein as the chemo had hardened the vein walls but it was unusable as my primary cancer had "disappeared" - it "re-appeared" a week later when I had a scan with contrast).

    Human error. Whoever interpreted the CT scan (usually a Radiologist) missed spotting the cancer and whoever was supposed to have double-checked didn't do their job properly (this happened when I worked for the NHS in Greater Manchester and after literally thousands of scans were re-examined twenty two patients had to be recalled as they did have breast cancer but had been told they didn't).

    Best wishes
    Dave

  • Hiya Dave 

    i would of thought the PET scan 12 weeks before shocking diagnosis would of highlighted something?? Xx

  • And did u take it further?

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